On hae day :-) 2019, the Interregional Public Organization “Society of Patients with HAE” (SPHA OPHAE) celebrated its third anniversary. Today the organization includes more than 150 people from 40 regions of the Russian Federation, providing administrative and legal support for patients and holding regular specialized scientific conferences, promotion events, seminars and webinars.
In spring 2019, the Society organized and participated in several significant events.
In March 2019, we held a webinar for patients with HAE within the “Right to Life” project that we launched in 2017. The event gathered patients from several regions and cities of the country – from Moscow, the Moscow region, Lipetsk, Ulyanovsk, Novosibirsk, and Vladivostok. Coordinated by Vice-Chairman of the governing board Denis Bezhozhnyi and me the webinar focused on the issues concerning the conditions for obtaining official disability status for patients with HAE. PhD Ilya Ushankov, the lawyer of the Society, as the main speaker, presented the criteria and conditions for the assignment of disability.
16 May 2019 we celebrated a public holiday in the Park 50th Anniversary of October in Moscow to raise awareness on the rare disease and inform on ways to recognize the signs and symptoms, sharing brochures and other printed materials. Supported by professional dancers and choreographers, a dance workshop provided a new type of body language experience. The campaign was a great opportunity to support the patients and deliver information that can help save lives. The more people learn about the disease, the higher the chance of survival.
At the end of May 2019, SPHA OPHAE members participated in the 11th C1 Inhibitor Deficiency and Angioedema Workshop in Budapest, Hungary. The event brought together academic researchers, medical practitioners, biochemists, pharmacologists, drug developers, health workers, and patients from around the world. I headed the Russian delegation with five members. During the four days of the forum, the patients and experts raised important details about difficulties diagnosing this disease and treatment prospects and discussed the latest achievements in new drug research and application development.
Following the Budapest workshop, we were busy preparing for the International Scientific and Practical Conference “Strategy and tactics for treating patients with HAE – Life without fear” held in Moscow 19-20 June 2019. The conference invited patients diagnosed with HAE from 40 regions of Russia, specialists in allergy, immunology, genetics, heads of pediatric services, clinical psychologists, and lawyers. Through a range of workshops, panel discussions, round-tables the event focused on the routing of patients with HAE, providing a correct diagnosis, effective and accessible treatment, essential medicines, and methods of preventing the disease in Russia and abroad.
Through annual scientific and practical conferences, SPHA OPHAE gathers HAE patients, the best medical specialists from Moscow and regional clinics, and representatives of administrative health care structures. This year, we are delighted to announce the first major international event with the privilege of welcoming the doctors and members of patient organizations from among other countries Belarus, Bulgaria, Hungary, Kazakhstan, and Poland.